This blog is about my experiences with hypothyroidism and to swap notes with other people. I was diagnosed in 2009 and am still not entirely well, though I’m much better now than I was. I set up a thyroid patients' support group in London in 2010 and we continue to meet regularly and welcome new members. There's lots of info on the net aimed at thyroid patients, much of it contradictory and confusing. My aim is to provide a more balanced perspective and information from credible sources.

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Monday, 23 May 2011

Learning about radioactive iodine treatment - Updated with links

My thyroid is underactive: hypothyroid. The other side of the coin is being overactive: hyperthyroid. From what I’ve heard being hyperthyroid is even less fun than being hypo and it can be more difficult to treat. I’m pleased to say I’ve not experienced it and I hope I never do.

But in the interests of learning more about thyroid disorders in general and to support the Royal Free Nuclear Medicine Department, who supported our British Thyroid Foundation London patient information event last month... I went along to the launch of two new films about radioactive iodine treatment for hyperthyroidism today, along with a few fellow BTF supporters who were also interested. We sat together and had the chance to chat to each other as well, which was lovely.

The Nuclear Medicine Department have created these films in order to provide patients with all the information they need to be able to make informed choices about this treatment option and to ensure that they know what to expect and how to take care of themselves and those they come into contact with after the treatment, if they have it.

The films were very well made, I was impressed. I know that a lot of people find the idea of radioactive iodine treatment very scary and I think the idea of providing information as a video that can be watched over and over again and shared with friends and family is a great idea.

There’s so much to take in and my own experience of thyroid diseasehas been that sometimes it can be difficult to process and hold on to even quite simple information. (I get muddled sometimes just making an appointment with the dentist or hairdresser - oh the shame of it!) It’s infuriating, but there’s no getting away from it, for some of us at least, this illness appears to sometimes impair cognitive function. And being faced with something as potentially scary sounding as “radioactive iodine treatment” might well be pretty stressful for some people. Being stressed and feeling unwell is not the ideal situation for absorbing complex information. So being able to go back and revisit the information in short film form, as many times as you need to, until you feel you properly understand it, sounds like a good idea to me.

I think if I was facing radioactive iodine treatment I’d be very reassured by having access to this film and I think it would also be helpful for those close to me to understand what it’s all about.

The camerawork was excellent, showing the hospital environments and particulars of the treatment very clearly so that patients can feel well prepared for what they are going to experience. And the voiceover was very clear and informative with a reassuring tone of voice that avoided coming across as in any way patronising.

I learned lots today. Here are some of the things I picked up:

Radioactive iodine treatment has been used safely for effectively treating hyperthyroidism since 1942. It’s an established mainstream treatment, tried and tested.

The best possible outcome is that your overactive thyroid will slowly become less active until it functions normally. Sometimes it will become underactive and you have to take thyroxine but this is seen as being less problematic than continuing to be hyper. Sometimes the treatment has to be repeated. It is usually successful.

After treatment you will be given instructions about managing the risk of the radiation for other people around you. It sounds like this is not difficult to do and the risks are not high, but you do need to be careful. For example you can’t sleep in the same bed as your partner straight after treatment and although you can have sex you wouldn’t want to be at it for too long, say more than an hour! Restrictions around proximity to other people and pets can apply for several weeks but don’t sound too onerous. Each patient gets their own tailored guidelines based on their particular situation.

I’d be interested in seeing some stats and was talking to the lead physicist,Danny McCool, about this, we agreed to follow up with each other to see if there is a good source of statistics on the treatment that patients who want more information could look up. Not everyone wants to know everything but for those of us who do, accessing quality information we know we can have confidence in is really important! Especially when there is so much on the internet that is sometimes of dubious provenance!

He told me he had only come across one patient in twenty years who had a bad adverse reaction to the treatment but I don’t think this would include patients who end up hypo and are not happy. There’s a question mark over follow up and what data is collected after treatment. I’m hoping to find out more about this. It’s all interesting stuff even though the treatment is not relevant to me personally, right now, and most likely never will be.

Sheesh!! Reading this made me realise it's nearly 8 months since I had RAI! How time flies!!

I'm one who suffered both extremes badly. I went from extremely underactive to quite overactive in a matter of days! Hyperthyroidism is horrible, absolutely horrendous!! Now though, I'm hypothyroid and still trying to stabalise the thyroid meds (other issues haven't helped. It would have been quicker if it wasn't for other unrelated health issues) but nothing is as bad as the awful hyper symptoms...that's something I hope to never, ever have to face again!

I'm about 3 months post-RAI, slid "textbook-style" into hypo (90% of us do, I understand) and doing fairly well on the thyroid supplements. My Graves Disease (cause of hyper) was caught early, by blood test during a physical, so I had a fairly easy time of it.... and even that was horrendous. Hyper symptoms are very hard. Hypo isn't great, but it's a walk in the park in comparison, what with the deep fatigue, pounding heart, insomnia, fogginess, crazy brain, fear of heart attack, doctor's orders to not exercise AT ALL, etc. of hyperthyroid.

The RAI itself was not a big deal... just stay 6 feet away from people and sleep alone for 3 days. Oh, and flush twice, and wash all your clothes and bedding afterwards. Since I'm in a long distance relationship, that was no big deal. About 3 weeks after the RAI, I had a few days where I could not move off the couch and it took 4 hours in the morning just to get up and dressed. Now, my energy is great... I feel mostly normal!

In re: the amount of radiation, I believe I was given 6.9 millicuries (I'm having a hard time remembering....) -- just under the number needed for hospitalization.

I am still in the adjustment period for the thyroid supplement. Main symptom is that I've gained ~10 lbs. Which is not pleasant, but hey, I'm not dead. AND I'm no longer hyper!

I was diagnosed with Grave's Disease, the antithesis of the auto-immune condition that you have as this led to me suffering hyperthyroidism. I've found that the majority of discussion and information available seems to be targeted at those who are hypo. Am I in a minority? I'm only 6 months into treatment and face the fact that in a further six months my thyroid gland will be woken up and who knows how it will perform. I could be given the option of RAI or surgery at worst.

I have recently visited a herbalist local to me who has treated those with thyroid problems before - with some success. There is no magic wand, but I would like to supplement NHS meds with something natural that could assist my immune system and perhaps help my body have the strength to protect me against similar hyper symptoms when my thyroid is eventually 'woken up'.

It took a while for the 'block and replace' regime to work and achieving an optimum thyroxine dose (when denominations of only 25mcg are available) was a challenge, however, my energy levels aren't too bad now and I've resumed work after 7 months of absence.

Thanks for sharing links to the videos, I'll definitely take a look. I tried to follow you on Twitter (@alittlebit) but not sure if you managed to follow back.

Thanks for sharing your RAI experiences Natalie and Ericka. You are both so brave, being hyperthyroid sounds like it can be truly horrible. I hope you will both soon be able to find a treatment balance that will work for you and get you feeling properly well.

Dr J I hope the links to the Royal Free Nuclear Medicine Department pages that I've now added to this post might help answer your question about micro curies. It sounds like different patients get different doses, tailored to their needs.

@alittlebit - I'm following you back now! thanks for following me and posting here!

Graves is less common than hypothyroidism so there is less info out there for Graves patients but there are dedicated Graves telephone support contacts on the British Thyroid Foundation website so I'd encourage you to reach out to them as well. They are really helpful and knowledgeable.

I too am keen to supplement appropriately but I am still trying to get my head round what's right for me and don't know what good advice would be for a Graves patient at all. For the record I spent a lot of money a few years back with a naturopath who had me on all kinds of supplements but turned out not to really know much about thyroid in the end. I'll always wonder if anything she gave me may ultimately have exacerbated my illness, she had me on soya milk for example which I now know is not good for thyroid patients. I'd look very closely at the credentials of anyone I consulted now.

I really encourage you to contact the BTF, the Graves volunteers there know a lot about how this illness works and might have some good suggestions. Let me know how you get on with them if you do make contact.

At any rate I'm so pleased to hear you are back at work now - you're ahead of me there - and hope you will continue to feel more and more well. Also very happy to be connected with you now.

Hypothyroidism runs in my family. My daughter became hypothyroid at the age of 12. I was diagnosed when in my late 40's. It wasn't until a couple of years ago, however, that I insisted that my thyroid tests had to be brought into the optimum range, that just above the low-borderline was not good enough.

I felt great for the first time since I was a small child when the levels were optimized. I had been diagnosed with FMS also, but after getting my thyroid hormone levels fixed, the FMS symptoms went away.

Your comment>it can be difficult to process and hold on to even quite simple information>is descriptive of me for most of my life. I had accepted the label of being "flaky."

hi "improper username" (Lol, whatever did you call yourself first time around??!!)

Thanks so much for your comment and I so empathise, it runs in my family as well but I knew nothing about it till I was diagnosed, somehow I don't think it was ever discussed, or maybe I just never paid attention till it affected me directly (my family is a bit far flung so we don't see each other often).

I'm so happy you are feeling so much better now and that you can stop thinking of yourself as "flaky". that's a tough label to live with.

My levels have been optimised for over a year and I still don't feel right, even with a little bit of T3 medicine in combination with my thyroxine. I seem to be a bit of a tricky case to treat and maybe there's more going on than just the thyroid for me. I'll get there though!

Thanks for stopping by my blog, come again. I thnk it's great for people on here to read about thyroid patients who have found an optimal balance with their meds. So many people feel a bit hopeless, success stories like yours are uplifting!

I think I had 21 micro curies-quite a high dose but nothing was really explained so the films are excellent. All I received was a bad photo copy of an article targeted at thyroid cancer sufferers. I was terrified. Good info is essential!

HI Im so glad I just found your blog.I had RAI yesterday I have graves. I was on the meds for few year went into remission for a year but then became overactive big time, it was awful I'm 50 yrs old and felt like a 90 year old heart pounding on slightest exertion, back on meds then my Dr told me I Would have to have either surgery or R.A.I.so even though I was terrified of radiation I decided to have it.I found the films you put up so helpful, Im feeling quite tired and my neck is a little sore but other than that so far so gooI have to take steroids for six week's, I'm not realy happy about that. Any way thanks for brill video my mind is more at ease after viewing it..

I had RAI drink,this is the 3rd day .....will my partner be effected n anyway,as we travelled in the car together,both n the front seats,for about 30mins to an hour .....and now he has gone home to the grandchildren ....i hope i havent given him any radiation....freak out!

Hi Matekino - you really need to follow whatever instructions the hospital gave you regarding exposure to other people following your treatment. If yoiu're not clear on what those instructions were, call and check with them. It's not the same for everyone I don't think. At any rate, I obviously can't possibly advise you when I know nothing whatsoever about your case and I'm not a doctor. Hope you and all your family are all well! x